Awareness is our beacon. It’s how Lewy body dementia will come out of the shadows and into the public eye.

The Lewy Body Dementia Association is committed to increasing awareness about LBD 365 days a year. This year, October 10-16 will truly be A Week To Remember as LBD families are Standing Strong with LBDA to raise LBD awareness and support throughout the country.

Participate by selecting at least ONE activity from any of the three links below. Together, we are…

Increasing Knowledge: Help to advance the cause by getting involved in community-based awareness efforts. Let’s make Lewy body dementia a household word!

Sharing Experience: No one should have to face LBD alone. Participate in one of the many ways LBD families connect to share their personal experiences of living with LBD.

Building Hope: Your much-needed support of LBDA’s mission means new hope for the 1.3 million families who are living with this devastating disease.

Join us or learn more about how you can Stand Strong with the 1.3 million families affected by Lewy body dementia.

ATLANTA, GEORGIA, USA, July 12, 2010 – Nearly 80% of people with Lewy body dementias (LBD) received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had LBD, according to the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias, released today.

This new report reveals people with LBD and their caregivers face barriers to obtaining an early LBD diagnosis. Caregivers rate specialists and general practitioners as inadequate in discussing disease progression. Additionally, caregivers experience moderate to severe emotional burden, and most experience a sense of isolation because so few people know about LBD.

LBD is the second-most common form of degenerative dementia in the elderly, affecting an estimated 1.3 million people in the United States. Symptoms include dementia, unpredictable variations in cognition, attention or alertness; hallucinations, Parkinson’s-like symptoms, a sleep disorder characterized by physically acting out vivid nightmares and dreams, and a potentially life-threatening sensitivity to certain medications.

“LBD is a family disease, affecting not just the person with LBD but also the caregiver,” said Angela Herron, President of LBDA’s Board of Directors. “This report underscores the challenges presented by a disease that affects cognition, movement, behavior, sleep and mood. Despite the fact that LBD is a common form of dementia many doctors and other medical professionals are unfamiliar with LBD, compounding the burden even further.”

Importance of Early Diagnosis and Physician Awareness of LBD

Half of people seeking a diagnosis saw 3 or more doctors for 10 visits over the course of a year before they were diagnosed with LBD, and diagnosis required more than two years from the onset of symptoms for 31% of cases.

Although prognosis varies among individuals, LBD is often a more rapidly progressive disease than Alzheimer’s disease, and early diagnosis provides families an opportunity to plan for expected decline in cognition, function and behavior. Given the evidence that suggests treatment with cholinesterase inhibitors may benefit patients with LBD more than those with Alzheimer’s disease, barriers to diagnosis have a negative impact on both the patients’ and caregivers’ quality of life. Especially important, early diagnosis of LBD provides physicians with an opportunity to minimize exposure to medications that may aggravate symptoms, such as antipsychotic medications. Nearly 60% of people with LBD may experience severe, potentially irreversible reactions to antipsychotic medications, and in rare cases, a life threatening condition called neuroleptic malignant syndrome may also occur.

LBD Progression Not Adequately Addressed

While neurologists made most LBD diagnoses, caregivers most often relied on primary care physicians for ongoing follow-up care and reported difficulties coordinating treatment of LBD symptoms between primary care physicians and specialists, as medication for one LBD symptom may worsen another being treated by a different physician. Caregivers rated over 40% of both generalists and specialists as inadequate in telling families what to expect in the future, and more than half of physicians as inadequate in suggesting telling the family where to find more information on LBD or community-based resources.

“The lack of information on disease progression is a serious challenge to LBD families,” stated Herron. “It’s essential that families plan in advance for the relentless progression of LBD, and not having answers on what that decline will look like or how fast it may occur, adds significant stress to an already difficult situation.”

Caregiver Burden is Physical and Emotional

Caregivers reported moderate to severe levels of disability in the person with LBD and over 90% had taken over instrumental activities of daily living, like preparing meals, managing medications, transportation, finances and appointments. Over 60% of caregivers indicated the person with LBD could not perform basic activities of daily living, such as dressing or bathing.

People with LBD had high rates of behavioral problems and mood changes and two-thirds of caregivers reported a crisis in the past year that required a hospital emergency room, emergency medical services, psychiatric care, or law enforcement.
LBD caregivers face a number of challenges: social, medical, functional and financial. LBD caregivers feel isolated and often have to respond to crises, but may not be receiving adequate support from family, friends or healthcare providers. These features have the potential to lead to adverse outcomes for the caregiver “burnout” including stress, depression and poor health.

“Poorer caregiver outcomes directly lead to increases in patient institutionalization and declines in quality of life, stated Dr. James E. Galvin, a member of LBDA’s Scientific Advisory Council and Professor of Neurology and Psychiatry at New York University. “This may be particularly important in LBD where patients are at an increased risk of institutionalization and mortality.”

The findings are based on data collected by the Lewy Body Dementia Association (LBDA) in an online survey of 962 LBD caregivers. Designed by Steven H. Zarit, PhD, an expert on caregiver burden in dementia and Professor of Human Development at Penn State University, the survey was conducted over a 6-month period. Dr. Galvin analyzed the survey data, which was published in the July, 2010 issue of Parkinsonism & Related Disorders and the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.

The full text of the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias can be viewed by visiting http://www.lbda.org.

The Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, Canada, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit

LBDA is urgently seeking persons in Texas or California who have Capgras syndrome, along with their caregiver, for possible interview with an international psychology magazine. Capgras syndrome, which can occur in LBD, is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member has been replaced by an identical-looking impostor. Those interested are encouraged to send a brief summary about your personal experience with Capgras syndrome in LBD to Angela Taylor at ataylor@lbda.org.

The National Family Caregiver of the Year Award nomination entries will be judged based on the magnitude of care and support provided to an individual, personal obstacles that were overcome in order to provide this care, health care industry obstacles faced on behalf of the individual receiving care, and the impact this care has ultimately had on the individual.

A third-party must submit each nomination, and it’s recommended that the nominator include a nomination letter of 500 words or less with the application. Homewatch CareGivers must be able to verify the individual for which the nominee provided care, and the nominee’s care must have been provided within the 12 months prior to July 26, 2010.

Nominations will be accepted through July 31 by clicking here. A panel including experts from AARP, the Alzheimer’s Association, and CareScout/Genworth Financial, and more, will judge submissions.

Local winners will be announced September 1, 2010. The national winner will be announced October 25, 2010. All winning nominations should be prepared for possible interviews and media appearances.

To fill out a nomination application for someone in your community click here, or call 800-777-9770 and ask for the Homewatch CareGivers office in your geographic area.

I was contacted about this upcoming Caregiving conference. If anyone is interested, click here or see below for further information:

The Family Support Center of New Jersey is pleased to announce the 2010 National Caregivers Conference. Our conference will concentrate on the critical importance of caregivers and the advances technology is having on caregiving. We are coordinating a conference that will direct caregivers towards information on easily accessible, cost effective supports to all populations, regardless of age or disability. Knowledge of available resources can help to alleviate the stress associated with caregiving, sustain families and marriages, improve caregivers’ health and well being, reduce the risk of abuse and neglect, and minimize or delay the need for more costly out-of-home placement. The conference will also serve as a networking session for caregivers to gain social supports and help them realize that they are not alone.

This year’s 2010 National Caregivers Conference keynote speaker is John Crowley. He will speak on his life changing decision to quit his job as a leading pharma exec and form a company dedicated to finding a cure for the life-threatening illness faced by two of his children. Mr. Crowley is involved with several charitable and community organizations, including serving on the Board of Directors of St. Peter’s University Health Care System. Mr. Crowley’s involvement with biotechnology stems from the 1998 diagnosis of two of his children with Pompe’s disease a fatal neuromuscular disorder. Mr. Crowley and his family have been featured on the cover of The Wall Street Journal and on The Today Show, CNBC and The Paula Zahn Show on CNN.

In 2006, Geeta Anand, Pulitzer prize winning writer for The Wall Street Journal, authored a book on Mr. Crowley entitled “The Cure: How a Father Raised $100 Million-and Bucked the Medical Establishment-in a Quest to Save His Children.” (www.thecurebook.com). His story was further chronicled on the big screen in the 2009 film “Extraordinary Measures” staring Harrison Ford, Brendan Fraser and Keri Russell.

Celebrate National Family Caregivers Month November 2009 by signing the petition letter for a United States postage stamp honoring family caregivers. The National Family Caregivers Association (NFCA) is in need of 2,000 more signatures and you can be one of them! Visit NFCA’s Web site by clicking here and then click on the U.S. Postage Stamp button on the home page to submit a letter to the Citizens’ Stamp Advisory Committee. And please pass this message along by posting it to your Facebook pages, Twitter, or other networking sites. Every signature helps!

Save the date to join the Parkinson’s Disease Foundation (PDF), online or by phone, on Tuesday, November 17, at 1 p.m. ET for an educational webinar, “How to Take Care of the Parkinson’s Caregiver,” with Barbara Habermann, Ph.D., R.N., associate professor, Department of Family Health Nursing at Indiana University School of Nursing. This FREE 60-minute PD Expert Briefing is part of PDF’s recognition of National Family Caregivers Month.

Many people often say that Parkinson’s affects more than the person living with the disease – it affects the entire family. Care partners – whether they are a spouse, a child, a parent or a friend – can experience significant life changes when caring for a loved one living with PD.

Dr. Habermann will explore common emotional responses that Parkinson’s care partners may experience. She will also identify signs of depression in the person with Parkinson’s and the care partner, point to specific areas where the partner may require help or assistance and let participants know about resources available to care partners.

How to Take Care of the Caregiver will be presented both as a webinar (web-based seminar) – where participants can watch a slideshow presentation online and hear an audio presentation either through their computer’s speakers or by calling a toll-free number – and as an audio-only presentation – for those who prefer to listen in by calling the toll-free number.

Participants joining the live session will have the opportunity to directly ask Dr. Habermann their own questions during the last 20-30 minutes of the presentation. This PD ExpertBriefing will also be available on the PDF website for up to one year after the live event.

For more information about this session, click here or call 800/457-6676. To register now, click here.